TAPVR Congenital Heart Defect: Felicity's Story of Hope
Andrew and I had the opportunity to talk with Nathan and Sarah Martin (of Go Forth Goods) about their journey with their youngest daughter Felicity’s diagnosis of TAPVR. Their daughter’s story is one of incredible HOPE, and there are fingerprints of God’s faithfulness in each layer. One of the most beautiful things about our time with the Martins was seeing their determination to grow together as a couple through this, Nathan’s leadership of their family, and Sarah’s sacrificial heart to care for and love her children. Get ready to be inspired.
Felicity’s birth was anticipated with joy and expected to go smoothly by her parents, Sarah and Nathan. When Felicity was delivered, however, there was some meconium present, and her breathing was a little unusual. The nurses performed a pulse ox test on Felicity, and her numbers came in at 87-91%. After 24 hours, her oxygen levels were still not at the required 95% to be released to go home. She had no major signs of problems on the outside, but the NICU pediatrician ordered an echocardiogram to be sure all was well.
While Sarah waited back in the room, Nathan went with Felicity for the test and watched outside the window while the doctors and nurses performed the ECG. Nathan saw the doctor glance at the nurses and nod his head. In that moment, in Nathan’s words, “My stomach just sank. I’m watching all this not knowing what they are finding, but knowing that they found something. Waiting seemed like an eternity.”
Back in their hospital room, as Sarah and Nathan waited for the results, Nathan took Sarah’s hands and said, “Whatever we find out, we’re gonna pray right now, we’re gonna be on the same page, we’re not gonna allow this to wreck our faith. This is going to be something that makes us stronger in the end.”
The TAPVR Diagnosis: Two Heart Defects Working Together
They held their breath as the pediatric cardiologist came in with the results of the echocardiogram. He showed them a diagram of a normal heart and a diagram of what Felicity’s heart looked like. She had not one, but two heart defects. And here’s the crazy part: the odds of these two defects occurring together are quite low (think 1 in 1,000,000), but these two defects were actually working together to help keep her alive. The cardiologist explained that Felicity had the rarest type of Total Anomalous Pulmonary Venous Return (TAPVR), a congenital heart defect that occurs when the veins carrying oxygen-rich blood from the lungs go back to the chamber of the heart with oxygen-poor blood. When this happens, the body does not get the oxygen it needs, hence the low numbers on Felicity’s pulse ox test. The amazing thing is that Felicity also had Patent Foramen Ovale, a hole in her heart that allowed the blood from the two heart chambers to mix. This gave her body just enough oxygen to keep her in a non-critical state.
Sarah and Nathan had to process all of this information quickly, and within hours, they were being transferred to CHOA Egleston where they were scheduled for Felicity’s open heart surgery at 4 days old. The surgeons in the cardiac intensive care unit (CICU) were assuring that the surgery, though rare, is very successful and usually leaves no complications.
Felicity’s heart surgery did go well, and the repairs were made to restore normal heart function. The next big milestone for little Felicity was recovery. As is often the case, the relief from the successful surgery was followed by the hard work of recovering and regaining strength and functioning. For Felicity this looked like her newborn heart maintaining a steady rhythm. Her heart would spike into the 230s and not be able to regulate to come back down to a safe range on it’s own (a condition known as supraventricular tachycardia (SVT)).
During our conversation, Sarah said that looking back, the first time Felicity’s heart rate spiked in recovery was the hardest: “Red lights started flashing, sirens were going off, the pads came out, and we didn’t know what was going on.” It was 15 days of ups and downs before Felicity was released to go home.
The Challenges Continue after Heart Surgery: Coming Home for Care
Felicity’s big brothers and sisters were so thrilled to have her home and love on her. Sarah carefully explained the special care that Felicity would need, and the kids were all in and ready to help. Sarah has been known among her friends as “super mom” for a while, but I think juggling her other 5 kids while caring for her newborn who was brought home on a feeding tube, needed a careful dosage of 8 different medicines, and not allowed to cry for more than 5 minutes at a time earned her a cape to go with her title. :)
The early days of recovery at home coincided with a virus among the older kids, requiring Sarah and Felicity to be quarantined in a bedroom for 2 ½ weeks. Acting as Felicity’s primary care giver, Sarah was sleeping in 20 minute stretches and feeling like she couldn’t see past the next moment.
Reflecting on that period, she remembered, “It was hard emotionally. I felt like I was missing out on the opportunity to parent my other children and be their mom. For 2 ½ weeks I talked to them through the door. I got through it because it wasn’t worth putting Felicity in danger. God gave me a lot of grace to get through it. I was still in the mode where I could choose to ignore Felicity and not give her the level of care she needed, or I could tough it up. There were times that I couldn’t see the light at the end of the tunnel. I remember praying to God when I was getting 2 hours of sleep a day that He would make my minutes of sleep feel like hours, and I really feel like he did that for me. I had to have the strength to do this and do it well. It was hard to do. I spent a lot of time listening to worship music, reading my Bible, and praying because I couldn’t do a whole lot with her aside from that. The rest of the time, I would watch silly tv shows to take my mind off of it. If I was focusing on my situation, my mind would go down a deep, dark path. I had to make a conscious choice to get my mind right. I could turn on a playlist of worship music and play it in the room to change the atmosphere. Speaking things out loud in faith that I needed. Nathan was a great supporter and would let me cry and say, ‘This is really hard. I don’t want to do this.’ I knew I needed to do this. We had people bring us meals and helping us practically.”
Many of their friends sent words of encouragement, including one friend who reminded them that Felicity was their only child who was not planned. She had been entirely God’s idea. Sarah remembers that as being a pivotal moment. “The game changer for us was when we stopped feeding fear and worry, but said, ‘We have hope again. God, Felicity was Your idea. You wanted her to be; You’ve got this.’ That distinct shift in the way we were looking at it gave us a vision for her life instead of feeling like we were in constant survival mode.” The Lord and their community around them truly preserved Nathan and Sarah during this time.
Beating the Odds of TAPVR
Over the next 9 months, as Felicity made progress in her healing, her doctors slowly weaned her off of all of her medicine. At her 9 month follow-up with the cardiologist, she had beaten every odd. And at the 1 year 9 month mark? Her cardiologist commented, “If I didn’t see the line on her chest from open heart surgery, I would never know there was anything wrong with her.”
After her TAPVR surgery, Felicity became part of a case study of 100 children who have had open heart surgery. The study does a developmental follow-up with each child at ages 1 and 2 years. Children born with a heart defect often have other health problems, developmental delays, etc. At each of her follow-ups, Felicity tested 6 months ahead of her age. My favorite part of listening to Felicity’s story was when Sarah told me that at her 2 month follow-up after surgery, she didn’t qualify for any extra services. The nurses had to scramble to figure out what to do because they had never had a child who didn’t qualify for services. Felicity’s life is unmistakably marked with healing and hope. Even during the early days of their struggle, each doctor or nurse delivered the same message: “She is such a joy! She just changed my day!”
Nathan reflected, “It has been the toughest thing we’ve had to endure, but I believe that we grew as a couple, we love each other more, and we were able to find more of God in it.”
As we concluded our time with Sarah and Nathan, we were truly amazed at how they were faithful to love the Lord, love each other, and love their family during this painful and taxing season. We are inspired by them and rejoice that, now at 2 ½ years old, Felicity is a joyful, curious, talkative, sassy, and cuddly little girl with a bright, bright future.